… here’s a partial and unofficial transcript of the BBC interview with Tomato Lichy (left). The artist and designer is advocating for the right of deaf people to use reproductive technology to select for deaf children, which would be prohibited under the British government’s Human Fertilization and Embryology (HFE) bill, set to pass the House of Commons this spring. Reaction to the interview is here.

The interview by John Humphrys was first broadcast on the Today program on BBC Radio Four.

Humphrys: Do you not have an obligation to the child that may be born that that child should be able to hear if at all possible?

Lichy: If you see deafness as a disability, yes. But I don’t view deafness as a disability. I feel very positive about the language, about the culture and about the history of deaf people, and I’m very involved in the deaf community

And also, we already have a deaf child. If we say to her in the future we had a deaf embryo but the government told us we couldn’t have that one, how would she feel about it as a deaf person herself if the government had forced us to do that?

Humphreys: You may feel very positive about your deafness, and you are absolutely of course entitled to feel that, but surely you’re not entitled to make that decision on behalf of an unborn child?

Lichy: I’m nor religious myself, but people say to me: God created me as a deaf person, why would you oppose God? These children are created, these embryos are created, they should have equal chances in life. I mean really for me the core issue is that the government is saying that deaf people are not equal to hearing people.

Despite the fact that over time we’ve had more and more rights for disabled people, now they’re seeking to establish a legal principal that deaf people are inferior to hearing people. And there may be more laws once this gap opens. I think we have to stop that principle being established that deaf people are inferior to hearing people.

(more…)

From the [Newark] Star-Ledger:

The number of babies born with cystic fibrosis declined by half in Massachusetts after genetic screening started to identify carriers of the gene, suggesting similar declines may be happening across the nation, according to a recent report in the New England Journal of Medicine.

Genetic screening for CF presents unique ethical questions, particularly since many people with the disease live into adulthood. In the 1960s, life expectancy for people with CF was less than ten years, but advances in treatment have extended the mean life expectancy to 37 years. Prospects for children born today are better still.

Researchers say they cannot definitively explain the decline. Among the possibilities:

• – Couples who learn both carry the CF gene may decide not to have children, may turn to donor sperm or eggs or may use IVF so they can test embryos before implanting them; or
• – Pregnant women who learn they are CF carriers may test the fetus and have abortions if the test is positive.

The Cystic Fibrosis Foundation has called genetic testing a personal matter and says it is too early to know whether the Massachusetts decline is being duplicated in other parts of the country.

From the [UK] Observer:

The British government’s Human Fertilization and Embryology (HFE) bill, set to pass the House of Commons this spring, will block any attempt by deaf couples to use modern medical techniques to ensure that their children are deaf. Members of the deaf community are affronted by the bill, and say it sends a strong message that the government thinks deaf people are better off not being born.

Paula Garfield, a theater director, and her partner, Tomato Lichy, an artist and designer, are featured. They and their daughter are deaf and they are hoping to have a second child, whom they also wish to be deaf.

Said Lichy, “It is a cornerstone of modern society and law that deaf and hearing people have equal rights. If hearing people were to have the right to throw away a deaf embryo, then we as deaf people should also have the right to throw away a hearing embryo.”

From the BBC:  Is it wrong to select a deaf embryo?

In an interview in the (UK) Guardian & Observer, fetal medicine pioneer Charles Rodeck tells us how things look from his side of the examining table. It’s a sobering view. Rodeck is the founder and head of the unit for fetal medicine at University College Hospital, London, and was among the first physicians to pioneer fetal ultrasound in the seventies.

Among his revelations: doctors are increasingly being called upon by panicked parents to predict the level of disability that may be present in a child, and they are not equipped to do it.

… Unless a fetus is suffering from a particularly well-defined abnormality, it is impossible for a physician to predict how a condition will manifest itself in any child. “Our diagnostic abilities have outstripped our therapeautic skills,” Rodeck said. “We now screen more women and can identify a huge variety of abnormalities, but we still can only treat a minuscule fraction….”

“… I have to tell parents all the time that just we don’t know or can’t predict exactly how their child will be affected by any particular condition,” he said. “Often we can’t even give a name to the abnormality suffered by a fetus….”

Rodeck also offered stiff criticism to the commercial IVF industry, which he characterized as “very competitive.”

“Some clinics try to keep a step ahead by offering more interventions than their competitors, even if they know these procedures are uproven and may not work. This can become exploitation…” He said he is particularly concerned about a growing number of pregnant women he sees who have been prescribed unnecessary, unproven and possibly harmful drugs by private clinics.

The full story can be seen here.

Top fertility doctors in Britain want to lift the ban on parents choosing the sex of their babies, saying that couples have the right to pick “a pink one rather than a blue one.” From the Daily Express (UK). Link here.

The practice of using donor eggs for assisted reproduction is growing dramatically, giving older and infertile women new hope of giving birth. (Your Gamete, Myself, by Peggy Orenstein, New York Times magazine, July 15.) While we hear lots of enthusiasm among those who stand to profit personally or financially, the sad truth is that many thousands of young egg donors are being lured by the promise of quick cash without adequate information about the risks they may face of serious physical harm, damage to their future fertility, or even death.

Because egg donation is virtually unregulated, long-term studies about the effects of intense hormonal medications and surgical procedures on young women have not been done. Women and their doctors ought to lobby for regulation and oversight, so the safety of egg donors will not be overlooked in the market’s multi-million-dollar quest for eggs promising certain hair color, eye color, and taste in movies.

Related links:

From the New England Journal of Medicine: The egg trade — making sense of the market for human oocytes, Debora Spar, March 29, 2007

From the BBC: Safety of egg donation ‘unclear’ – June 30, 2005

From In These Times:
Genetic Disorder: Parents with limited incomes are being denied access to genetic tests and the counseling that experts say should accompany them

From Boston Globe: With rise in autism, programs strained

From the Times (UK): Couples are ‘driven to IVF tourism by ethical disparities across Europe’

From ABC (Australian Broadcasting Corp.): Stem cell research boosting women’s egg trade

From Fox News: Infanticide, abortion responsible for 60 million girls missing in Asia

From the American Medical Association News: Confronting eugenics: Does the now discredited practice have relevance to today’s technology?